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Journal

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July
31
2018

Tuesday, July 31st

So I was going to say in this journal that it would be my last entry simply because I have reached burn out status and just before I get to it I find out that Andreas is going home on Monday! Praise the Lord!!!

In my last entry we had just transitioned to a Rehabilitation facility. Andreas was getting a focused amount of PT/OT which was challenging him greatly. He was improving slowly and steadily.

Our stay at the Peak Resources facility will reach it's third week this Friday. I am thankful for our insurance company, first, because we have it and second because they are ending coverage passed Monday for rehab 😊

I will be taking my husband home on Monday...it's almost hard to believe that I will no longer be walking into an empty house every day. This by far will be the happiest transition yet!

Thank you to all who followed our story through Caringbridge. I cannot begin to thank you enough for all the prayers, encouragement, and best wishes for our greater good. You guys made all the difference in the world to me and helped me to find strength in knowing I was not walking this road alone. Blessings to you all.

Prayer points:
~back pain relief
~continued full effort in PT/OT

Praise points:
~Andreas' improvements
~God's sustaining Grace
~Your involvement

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July
16
2018

Monday, July 16th

God provided a miracle for us on Friday...Andreas was moved to a Rehabilitation facility near home! 
He is at Peak Resources in Graham (Rm #506) and will receive ongoing PT and OT 5 days a week. Here they will challenge him to sit longer, walk more, and begin to do his own self care tasks which will include walking to the bathroom, dressing himself and taking showers.

The bleed that kept him at Duke was caulked up to residue blood from the the ulcer that was still sitting in the GI tract.

Since we got here late Friday afternoon not much has been accomplished to this point. We have found that weekends in the healthcare environment slow down to a crawl because of skeleton crews and lack of information transfer from the regular staff to the weekend staff. This has proven true throughout all five of the healthcare organizations we have stayed in.

Prayer points:
~Back pain relief
~A calm spirit for Andreas
~Full effort in PT/OT sessions

Praise points:
~Out of the hospital
~Financial needs met
~Increased appetite 

July
9
2018

Monday, July 9th

A very difficult week . . . no sooner do I update this journal and the very evening another complication crops up.

So we took a giant step back on Monday evening because blood was found in the stool. This continued through Tuesday so Andreas was moved to the CCU on Wednesday and an upper GI scope was done. A small ulcer was found just beyond the stomach and it was clipped shut. They continued to monitor him and unfortunately the bleed continued. A second upper GI scope was done on Thursday and they couldn't find any other bleed and the clip was still in place (it had not come off).

Now they want to do a Colonoscopy. We were told on Thursday, nothing was done on Friday, he was moved out of CCU on Saturday (he's in room 4103 on the 4th floor) and so he has been on hold, while still losing blood mind you, for 3 days counting and when I spoke to him on the phone this morning he said that he would have to wait until this afternoon even though he did his prep (drank three 20 oz bottles of contrast) last night. Poor guy!

So if you hear the frustration, yes it's there, for us both! We are in the tenth week of this journey and as soon as we saw a light at the end of the tunnel the tables turned drastically on us. Don't get me wrong, obviously, I am grateful they found the ulcer before we got home. I told Andreas we should be thankful that the ulcer was found before we left the hospital. It would have gotten bigger and he would have been in pain and misery (and unsure of what was causing the problem). For now we wait...

In the meantime Andreas is starting to have regular back pain that is increasing day by day. The pain meds he requests are no longer the for wound but for his back!

Prayer points:
~That they would find the bleed
~Back pain relief
~Patience
~A calm spirit for Andreas

Praises:
~An ulcer was treated
~Not in CCU
~Awesome support from family and friends

July
2
2018

Monday, July 2nd

Andreas continues to have a hard time with his appetite. He is not eating well and this lengthens the time he will keep the gtube. They have to make sure he takes in enough calories before removing the gtube. I have tried offering him many options without success.

PT/OT is going well but rather slowly. Andreas did walk (assisted by a walker) on Thursday,  Friday & today 75+ feet! He also has to sit in a chair which he finds very difficult to do for at least two hours once a day. There has been an open discussion about the possibility of his "graduating" to a Rehab facility soon but he has to be able to transfer from the bed to a chair without help.

The situation with his wound came to a head this pass Wednesday when they placed a wound drain into an area on the left side of his abdomen where his infection originated. That was where the fluid was collecting causing heat, redness, and fever.
Thank God b/c we were visited by an infectious disease control doctor that same day who reported finding three different bacteria in Andreas' blood! Well we prayed the blood of Jesus over that situation and got a report the following day that his blood was fine, when I pressed the doctor for an explanation he couldn't give me one ... 😀

Prayer Points:
~increased appetite
~complete wound healing
~endurance w/walking & sitting

Praises:
~Andreas is walking w/a walker
~blood bacteria healing

June
25
2018

Sunday, June 24th

Andreas has been moved to a Long Term Care facility and has been here for 5 days now. He is eating more but still has a poor appetite in spite of being placed on a regular diet (his gtube intake was decreased to night time only to assist him).

His trach was capped off on Wednesday (this allowed him to breathe through his nose and mouth). Trial c-pap machine while capped were done on Thurs-Sat night and because he did well the trach was taken out this afternoon! Yippie!

PT/OT is done 5 times a week, he is standing up (w/help) and has begun shifting his feet to each side. There are specific leg raises and resistance exercises that he is doing in bed to help strengthen his abdomen and leg muscles.

He has been running a low grade fever/fever since Friday night. Has been placed on two rounds of antibiotics one yesterday and today. The left side of his abdomen has been suspiciously red and warm.

Prayer points:
~muscle strength
~increased appetite
~wound/fever

Praises!
~Trach removal
~Eating more
~LTC facility

June
17
2018

Sunday, June 17th

Even though Andreas was given the go ahead on a full liquid diet he does not eat. Eventually they will want to discontinue the nutrition he is receiving by gastric tube and he does need to practice swallowing.

Thursday they changed out the trach to another #6 but without the cuff. This has allowed for more airflow and easier breathing. His pain medicine schedule has been cut down to help reduce delirium. 

Friday, he sat in a chair for 3 hours straight. He was exhausted but had the longest period of lucidity which showed a direct correlation between movement and cognitive activation.
Trying to either get him in the chair daily or have him sit at the edge of the bed for as long as he can manage.

This morning they noticed a drop in his hemoglobin, they are keeping a close eye on this. We have been waiting since Thursday to hear from the insurance company and transfer him to the LTC facility.

Prayer points:
~choose to eat
~hemoglobin levels
~insurance company approval
~healing from tachycardia & delirium 

June
13
2018

Wednesday, June 13th

Andreas passed his swallow test yesterday although it is weak. He has been placed on a full liquid diet (full means it includes soft foods as well) so that he can strengthen his ability to swallow. This requires that he be sitting upright, have his voice valve on (for safety reasons) and a nurse must be in the room. Apparently, swallowing is more complex than we realize.

The MRI results were good. No other situation is going on with his brain other than post sedation delirium. They also redressed his wound, this time though, all of his sutures were removed and now he has a wet to dry wound dressing instead of a wound vac which will be changed daily.

PT came to have him sit on the side of the bed again. He managed sitting (with assistance) for 15 min PT was thrilled and gave him lots of kudos! Of course he was exhausted.

A discussion began yesterday about a Long Term Care facility. The LTC facility will help wean him off the trach, work w/his cognitive function, take care of his wound and provide OT and PT for him. He would be the for about 3 weeks or so before moving onto rehabilitation.

Prayer points;
~better sleep at night/less coughing
~the right LTC facility
~swallowing & speaking improves
~complete healing of delirium

June
12
2018

Tuesday, June 12th

Andreas will undergo a swallow test at 11 am today to see if they can start giving him food by mouth. The trach will stay in place even if he passes the test and begins to eat.

He got through the MRI successfully yesterday but he did struggle inwardly and became nauseated. He told me while I questioned him that both being enclosed and the noise the machine makes made it difficult for him. We are still waiting for the results. He gets the assessment questions correct sometimes and sometimes not. 

His wound vac change went well and the wound looks like it's healing beautifully. The trach change was quick and a bit painful but he did great and now can speak without the voice valve being attached first. He had a visit from the PT this morning and managed his body into a sitting position with only her assistance. He sat on the end of the bed for 10 min . . . Go Andreas!!

Prayer points;
-that he would pass his swallow test
-he still has tachycardia
-calm for restlessness
-complete healing of delirium

-compassionate medical staff